Friday, November 17, 2006

Thats all a large part of me wants to say, but, if venting is what this is all about, ill ignore it a bit for now.

To say this month has been busy is an understatement in the extreme.

To begin with, I spent a week in hospital, wired into a wall with a “pouch” containing a computer (not the fun kind), strapped to my chest 24/7.
I was on a leash of brightly colored wires glued into my hair running into a box on a wall. While doctors, nurses and others willed me to have seizures so they could gather their information that I was told would “help” me.

I suppose maybe I expected too much…..
I told myself, “if I can stay in the entire week without discharging myself, let the seizures happen and go through every damn test they want to do, I’ll feel so much better,…birds will sing, squirrels will take acorns from my hand and life will be just Disney!

Guess what, it aint, theres a surprise.

I stayed like that, in that bed, for seven days.
What did I feel?
I dont completely know if Im honest……
I dont remember most of it.

Its been one friggin week, and most of an event as big as that has already gone.

Its hard to be concerned or excited about somthing you know you wont remember next week.
So why bother?

So, for now at least, Ill take my pleasures from the moments thank you very much.
The moments like playing the PS2 I got for my birthday, seeing the smile in my guys eyes as he gave it to me. The smile on Karens face as she tells me about her latest crush. The smile in Elaines voice as she sings happy birthday to me on the phone and tells me about liams latest exploits. The unwilling smile in my mothers voice when she tells me about how her computer was infected with a virus that popped up porn ad’s in her office. The smile on my dads face as he tells a joke he knows we will all cringe at.

And I’ll try to remember all those smiles….. like I always do but always fail to.

But oh, Ill remember all those debts I have hanging over my head like blades just waiting to fall. Ill remember the bad dreams. Ill remember the needles. Ill remember having to have my head shaved to get rid of the painfull glue. Ill remember the strobes. Ill remember the kenny rogers “Hits of country music” ad that was on tv as I flew headlong into my last seizure. Ill remember tasting the blood in my mouth as I tried blindly to let the man I love know that his man needs him, yet again. Ill remember seeing how concerned he was as the ambulance lady tried to make sense of my mumblings. Ill remember that almost every day will begin with being called by some utility company I owe, or reminders that I need to sort one thing or another out, or talk to such and such about whatever, or get onto somone about somthing and why am I leaving it so late, I must not really need it.
Its simple. I cant. I cant get my mind and body to do the simple things that I know I should be doing.
Those things my sodding brain, such as it is, has no problem remembering.

You may be thinking “give it time”…… nope. Time has no real bearing on a life that is essentially static. Except as a constant reminder that you aint moving either way.
So, any of you who know me and are reading this, be very careful asking me “how are you” …Im not sure I have the strenght anymore to smile and lie. But I’ll try and remember to. And no matter who you are, you will probably hear “I’m fine”.
B

Monday, November 6, 2006

Well, as you may have guessed, Im home.
(Still a long way to go though, and i’m back in on the 14th for more testings).

It IS great to be home I must say, being in hospital makes you realise how lucky you truly are, and how much home means to you.
I think it was actually harder on Noah than on me (tho’ he wont admit that), but he got through it amazingly well and gawds, when I got home, the house was *spotless*.
The little fecker surprised me with an amazingly clean house! When he should have been resting!
I dont think this place has been so clean and tidy since I moved in here last year.

Typo, went ever so slightly mad when I got home, getting her unstuck from me was a little tiring I must admit

Yesterday, I had a relatively bad seizure, but, to help keep me sane I have convinced myself that it is down to the meds being changed and that the last week was not a futile excercise in pain.
Im not sure I have ever been as scared of a seizure as I was of yesterdays,…. for the beginning of it, I was (felt) completely “normal” but couldnt speak or move. Thats new for me.
Noah called an ambulance as he was worried about how bad this one seemed, but after I regained consciousness we decided not to go into the ER as the last time I went in I was left on a trolley in a corridor for an entire day and night.
Besides, another night in hospital and I’d lose whats left of my mind, that can wait a week or two at least!

Another one again earlier this morning. Luckilly I was in bed and it was a bit less scary as I actually thought I was asleep. (Tis hard to explain how exactly these things feel tbh).

Right now I have a thumpin headache and my jaw feels like I’ve gone 10 rounds with tyson, so Im leaving it at that.
Thanks to all for all the best-wishes while Ive been away, means a lot.

Monday, September 25, 2006

Tonights daily litter tray change.
First off, the light in the kitchen blows so all im left with is a torch-light.
So, I begin my nightly routine of lifting the tray out and dumping it into the awaiting bag and re-filling with fresh litter…….

I lift the tray, (only 16 hours old tray btw) and realise that *somhow* madam had managed to balance herself on the edge of said tray, and make a single large “turd” over and through the 2″ space between the tray and the corner!

Now, by itself thats an amazing feat, however madam being madam, had then proceeded to in less than a day, collect all sorts of paraphenallia (sp?) to “cover” said turd.

There were coke bottle caps, super-valu reciepts, bic biros, and then on top, right there like a card wedged for display on a cake, was a large M&S reciept folded *just so* to be proudly proclaiming “This Sale: E14.99 Thank you!”

*sigh*

Now I can laugh, 15 mins ago, bent precariously off my wheelchair, glaring behind a litter-tray at a over-priced bit of cat-art, I could have killed her.

But, then, as I am bent this way, almost castrating myself in this contortion, cleaning it up, scrubbing, bleaching and spraying….. over she comes, and proceeds to rub her face against mine purring like a generator as if to say “Is’nt it just spectacular daddy!”

Saturday, September 23, 2006

Well,…..

In a weeks time, my younger sister gets married!
Tis I have to admit, a strange feeling. She, the girl whom I remember sitting beside watching saturday morning cartoons, arguing over whether to watch he-man or punky-brewster, is now about to walk down the aisle!

My gods a whole lifetime has passed in what dose’nt seem all that long a time.
I can’t wait to see the smile on her face as her special day begins, and all the planning and worrying gives way to pure happiness that day.

And its a day that will be documented for the ages. My guy will be making sure of that ;0)
It will be a day that she, her hubby, children and extended familly will be able to look back on anytime they want and remember the day.

And it will be a day I too will be able to look back on when I need to be reminded that the good days in life out-weigh the bad.

Its going to be a wonderful time Elaine, and thanks for letting us be a part of it. ;0)

Until you hear my speech ;oP
Nah, I promise Ill be good and not be too embarassing, MUHAHAHA! :0)

Wednesday, August 30, 2006

This morning, oh I think it was between 7am and 8am, we had yet another little surprise delivered via our bathroom window this time….

*sigh*

Smaller damage this time, as its a smaller window (about 100cm each side) but still means another entire
pane of glass has to be replaced, today.
Ironically, it was a larger stone that did it too.
Im sitting here in the kitchen, after a hellish morning of cops, landlords and construction managment companies.

Noah’s still asleep, thankfully none of this has woken him, nor will I. I know he would probably want to be woken, but I want him to have some good sleep before he hears this. (I do hope you understand love).
I know it hits him harder than it hits me, I find it easier to “run on auto-pilot” during the event and all that follows and keep my emotional responses until its all sorted and put to bed. Then, I’ll allow myself to feel again. Till then, “professionally numb” is the order of the day.

Does’nt help I suppose that due to a leg injury, I’m barely sleeping and having to stay off it most of the day…..

Wednesday, August 23, 2006

As I sit here at 2am I can’t help but think about all that has happened this last week.
Most of you know, we came home to find a kid had thrown a large rock through our window a few days ago.

Upsetting?

Yes, very.

Scary?

Yes, very.

Surprising?

For me, unfortunately, after a while of thinking on it…. not hugely. Somthing I did’nt even realise until I saw my guy Noah’s, reaction to the same event.
What surprised me more than anything was how complacent I had become.

I’ve lived here about a year now, before that I lived in the the house literally opposite this one for about 9 years.
So, thats a decade of living in this immediate area.
In the entire 10 years, I think this has to be the first time this has happened to me.
Thats not to say it should have, but to a lot of people not so far away that would be very surprising.

The good side of this is, hopefully, in one year we will be moving home into a apartment complex, with the name “Valhala” which I cannot help but smile over, and this incident, scary and upsetting as it is, just gave us the motivating push we needed really.

Thursday, August 10, 2006

It has been brought to my attention that I should not be neglecting my blog.

Hmm, lets see,….. erm……what to talk about…..

/me hums the song “Under Pressure” by Queen….

Well, today we decided late in the day to go out and grab some food in a rather nice nearby(ish) place.
Food was actually pretty amazing (though rather overpriced), but being able to try a “Malted” shake instead of a regular was worth it by itself.
Also its the only place in Ireland it seems that does’nt buy the same generic veggie burgers as every other place in the country seems to. This place actually bothers to make their own!! *gasp*

No matter where in Ireland you go, no matter what take-away you order from, you can be almost 100% sure of one thing, if you order a veggie-burger, the burger part itself, will be the exact same everywhere. It literally does feel like they all buy the same brand.
And god-forbid you ask for it without the bizarre range of sauces they pour on, you do that and you can add another 10 mins to your delivery time, and if you get (as we often seem to) somone taking the order who dosent speak much english, then forget it. You will end up with a “wedgie burger”, or whatever other bizarre translation has been assumed.

Noah’s new book was released this week, he surprised us all on Sunday! It truly is amazing, and seeing my sisters and nephew in it, really makes my year.
There is nothing like seeing the people you love in a place where you can just open any page and remember a peice of beauty on the specific day that picture was taken. Its a very very special feeling.

Yet again, he has given us a gift that is so unbelievably valuable and will be with us for life, and even past that, through the familly generations to follow.
I have this image in my head, of my nephew Liam, taking a book down off a shelf and showing his kids, “Here’s my mammy & daddy when I was young. And this is your great-uncles Barry & Noah, your great-aunt Karen,” etc…. kinda like that soppy ad for “Wurthers Original’s” sweets on the TV:)

Monday, July 31, 2006

Quite often these days, I find myself contemplating the “power” of the internet.

It has the power to improve lives, and it has the power to ruin lives.
It has the power of enabling communication, and yet it is also very easy to mis-understand typed-text.
It gives some people experiences they would have missed and yet it can also be boring as hell.
It can bring people together or tear them apart.

Often what we hear or read about “the internet” can be portrayed in a very bad light, but….
in so many ways, it sounds like just normal “life” to me.

I guess the nets no different to real life in so many ways that its easy to get caught up in it, thinking, feeling, living via a screen and a keyboard (all us geeks have been there lets face it! ).

But I also think it has one HUGE bonus………

I think, as people, in “real life”, somtimes we find it difficult to see whats right in front of our eyes from time to time.
We dont have the luxury of having what happens right there on the screen, and if we did, would we feel the same emotional response?
I think some of us do, I think there are people who dont see text, or some unknown entity talking, I firmly believe, despite popular opinion that some of us can actually communicate over this net of ours in a positive and constructive, and yes, emotional way.

So many people in my life I have met initially online, or at least communicated with via the internet at one point or another, have become people I consider my closest friends.

For example, a perfect example, my sister Elaine,….
There was so much about her I had almost “forgotten” or just plain did’nt know.
I think now, these days, I feel closer to her than I ever realised.
I actually feel like she is an extremely close friend as well as my sister.
Forgotten things can be said in the time it takes to turn on a computer, things we mean to see or say but for one reason or another forgot to talk about, or never had a chance to.
For instance, she recently posted about how difficult a life she thinks I have had, and I told her that I actually truly believe lifes been a lot harder for her than it has for me.

Thats somthing I had meant and wanted to tell her for years, but somhow never did. Which is my own fault, its somthing I should have told her long long ago.
More than anything else, I cant help feeling and hoping that the net has played a role in me finally saying that.

In these quiet moments, when we are reading our words, ant the words of others, we can do it at our own pace, never having to worry about coming up with somthing “on the spot” that often comes out wrong somhow in the hustle and bustle of verbal communication.

My other sister, has her own blog these days so we can see the things that often arent said.
My parents read these things and maybe learn a bit more about the people we are now, as opposed to still being kids in their eyes.

And I myself have met the man of my dreams, who I would probably never have met if it was’nt for miles of fibre optic cable running under and over the vast sea’s and lands of this planet.
And, had it not been for him, we would never have shared this familly experience in the first place, when I think about it.

A perfect example of how the internet can change an entire familly in such a positive way.

Sunday, July 30, 2006

I’m a lucky man, I am surrounded by people I love, who for some reason think I’m worthy of their love in return.
Im happy with where I am in life, yes there are things I wish and dream of, but in general, I’m happier than I have been in almost a decade.
The problem with being so soul-happy, is that the things that you might have not noticed before become heart-wrenchingly apparent.

For instance, seeing somone who you love, going through somthing that hurts them.

Whether that be a health problem, not knowing how amazing a person they are, or worrying about where their next meal is coming from.
I dont have to look too far to see somone, somone I love, who truly does’nt realise how special they are. How amazing they are to everyone surrounding them, just does’nt register in their minds, and it can be the most mystifying thing in the world, and also the most upsetting at times.

But, somwhere, somhow, I know they can get through it, I know they both have the personal strenght, that “aura” you see everytime you look into their eyes.

Karen & Noah, both of you are loved, adored & respected for who you both are and what you both can do and have done. And both of you, no matter what, are always on my mind, every second of every day.

I know this is a difficult time for you both, and just know, I’m here, I have two big shoulders to lean on, and two big arms to hug.

Tuesday, July 25, 2006

This little girl has to be seen to be believed!
When shes not “cooing” like a pidgeon shes puurrrring like a generator!
I’ve never ever met such an affectionate kitty!
Which is amazing really, this tiny girl was made have THREE litters of kittens before she came to us, she is so tiny Im amazed she made it. Now shes neutered and vax’d. her bad times are over, its all good from here.
She is a little calico girl who spends every waking moment looking for rubs and purring like a generator.
Im sure if purs could generate electricity she could power the national grid and then some!

This little bundle of fur and purrs arrived to us via Jan at our local rescue center, thanks Jan, charlotte, miriam and everyone else involved, these people do amazing work with no government funding, if you can, please support them. They and their furry charges deserve it. Even a little makes a difference. (25 dollars or approx 20 euro, will feed a kitten for 8 weeks in rescue!!)

Heres a pic of our new arrival and you can bet you will her a LOT more about her over the next few days / months / years!

Tuesday, July 18, 2006

I can understand that its impossible for anyone else to understand 100% what somone else is going through at any given moment.
Somone living with somone who is going through somthing see’s a lot more and therefore understands a lot more, as it is in their face on a daily basis. And whether or not you are happy about that, you have little choice in the matter.

However, others -no matter how close they are to a person, have no choice but to make assumptions based on what they are being told.
Often, its very difficult for somone to tell others, no matter how close, who dont actually reside with you, every detail of how you feel.
The in’s and outs of why you cannot answer the phone today, the bits an peices of pain that when added together stop you from having a “good day”. The reasons you “just can’t do that today”.
Often because you don’t want to upset or worry them. Even if it means you are taking on an extra burden in keeping some things to yourself, thats fine. When you can.
Human beings have a funny quirk that runs through us all, while we have somone, the image, the personality of that person that we each see as being current, is normally based upon our fondest memory of him / her, about when we were proudest, happiest and most thankfull for that person in our lives, the future, that we try not to imagine all that much.

And then that same future actually arrives for that person.

And as him the NOW him, you want them to think you are still the same person they have in their minds, the person who could afford to take chances and live on the edge, the person who had no problem doing things that anyone else could or would do, the person they love unconditionally and always will. But you dont want to show your failings (who would?), you dont want to show the things that most people would find hard to understand, whether out of pride or just simple embarrassment.

The problem arises I suppose, when the things you have kept back, become things that you now can no longer hide, and have an effect on their idea of who you are, Im not talking about the way you are inside, Im talking about your new limits, the NOW you, and you must try to understand how difficult it is for them to adjust to that after a lifetime of somthing else, I suppose.
Yes, its part of the ageing process, but, I do think its different for a non-physically disabled person, a person with a disability, who’s life has been spent celebrating their abilities and trying hard to ignore what the person cannot do. When the cannot-do’’s become more obvious, or change, as they normally would with circumstance, I suppose it is difficult to understand for somone who has been looking-in for a long time.
A difficult balance to strike in any situation I know, but I can’t help wondering, how to make it balance properly, or indeed, if it ever can.
b.

Saturday, July 15, 2006

Six months- Half a year, goddess it so dose’nt seem that long, and in many ways it seems longer!
I feel like there was never a point when he was’nt here, this last six months have made the rest of the years melt away and start over in a way than I couldnt explain with a million words and years at my disposal.

He is so much more amazing that I could ever hope to be able to put into words……. let me count just some (a few of many, hell, just read my familly’s posts) of the ways he has affected the lives of me and those around us…….

1- He loves me, and he tells me, and I can tell him, without fear of ridicule, and with no doubt that either of us means it.
2- I love him, in ways I didnt think were possible to feel, life & soul bonded is the only way I can describe it.
3- He has helped my entire familly communicate more than any of us ever have before, and we have learnt things about ourselves that we never would have known without him being here. And he loves them all, completely and without exception.
4- He is the best friend I never thought I would have.
5- He is patient, generous and kind, loving, tender and understanding, amazingly soulfull, intelligent and trail-blazing, everything he tries he masters on a scale that to most of us is stunning, even though he rarely sees it that way… Things go through that bald head that Stephen Hawking, Einstein, Bill Gates and Da.Vinci would be amazed by. And he never sees it.(Im working on changing that, its the only thing about him I would ever change).
6- I love him, like I have never loved before, like I didnt think it was possible to love this way.
7- He knows what I mean when I say “ditto”.
8- He knows what I mean when I say random words that are’nt what they were supposed to be, for instance, I often have a momentary synaptic misfire when the name of an object will vanish from my head, and instead of saying “I’m going to get my glass” Ill say “I’m going to get my.. thing”…… he always sees the humour and knows what I mean, and smiling, he never ridicules me. (And godess knows there are many things he could over lol)

What more can I say, I love him, and Im very very lucky,… I got to fall in love with my best friend, he’s been my best friend for nine years, and even now, after being with me for half a year, being madly in love with eachother, we are still best friends.

Tuesday, July 11, 2006

I went around to our (extremely dodgy) local off-licience tonight for ciggs as we had overslept and everywhere else was shut.

This particular pub is known for being one of the biggest dives in Dublin.

After getting grabbed, poked and nearly vomited on, by the drunks inside, I finally reach the top of the queue and get my precious purchase, then I go outside to see said drunks falling into their cars and trying to drive home.

As they vanish into whatever direction they are driving, I wonder what kind of a world we are living in, there is not a single excuse for D&D.

Ridiculously, I have heard the same people (when sober, conversations overheard in local stores etc.) say things like “jees, he should be locked up forever for driving in such a state!” referring to the latest drunken driver that had hit a child and whos death been reported in the local media.
I was going to take registration plate numbers, go home and phone the local police station with them, but then I realised that stopping there at midnight would probably mean, well not nice things. And these days, I have to remember, no matter how much I dislike the thought, that my strenght and ability is not what it used to be. And with an already sprained wrist I would be placing myself at a stupid disadvantage.
Arrrgh, this will bother me all frigging night, who knows who one of those drivers killed on their way home, you’re screwed if you do and screwed if you dont. Never a truer phrase was coined!
b

Monday, July 10, 2006

Grabrail bar in bathroom, for using when moving from wheelchair to toilet, when used for said purpose, came off the wall today, sending me crashing down to floor spraining my wrist in the “must avoid clattering head off sink” process.

The gods have a wonderfull sense of humour at times, thanks guys & gals.

Monday, July 3, 2006

Besides, I doubt anyone would want to hear me moan on and on about the effects meds are having on me. I know I certainly dont want to hear me moan on and on about it.
Suffice to say, It aint nice, it aint pleasant, and it better work or my doc dies.

Anywhoo………. lets see, whats been happening.
Oh, our insect invasion has stopped, probably because of improvised screens and duct tape along with cans of raid.
Seem to be having a lot of trouble sleeping right now. Even though Im actually going to bed at a reasonable hour, I just cannot sleep. I lie there for hours just thinking about meaningless things and worrying about things that could easilly wait till morning.
Last night for instance, I actually worried for an entire hour about whether or not I had put the butter back in the fridge, not once did it occur to me to actually go and check.
I know, I’m either very lazy or losing my mind.

Damnit, why is it I always sound like Im moaning on this thing?!
Probably coz I am, tis my moanspace if I want it to be after all.

Wednesday, June 28, 2006

Today was interesting and not entirely unpleasant.
We went out for a walk and of course, my hayfever decided to kick-in.
Its funny, for that while, as I sneezed my head off, I forgot about the effects the anti-biotics are having.

Maybe I should carry around a little glass jar of pollen and when I wanna be distracted, stick my nose in it!
b

Sunday, June 25, 2006

Well, they (the pills) sure are kicking in now.
I notice myself becoming more irritable, one minute Im my normal self, the next, somthing silly will happen like the “m” key on my laptop sticking, and Ill want to put my hand thru the screen.
I think my sudden lack of patience probably comes down to the fact that the various pains like my back and joint pain inparticular, are getting so bloody extreme that they are actually making me want to take the painkillers, and those I avoid like the plague if at all possible normally.

Ah well, tomorrows another day and if I rest today like im sposed to, it might be a better one

Thursday, June 22, 2006

Tonight see’s me starting upon a new and rather intensive 4 week course of combination medications for a complaint that has, till now, been driving me crazy.
Its a kind of rash caused by a type of infection, which makes parts of my skin extremely raw and sore, and it comes up in a different place every day.
According to my Doc, this treatment is going to mean the next month is going to be rather tiring and not exactly pleasant, until its over and my system returns to its “normal” balance.
Right now, this infection has my tempreture running at 100.5 degrees and I’m feeling pretty foul. I have a taste in my mouth I cant describe which makes pretty much everything taste like rancid sugar,….. how I know what rancid sugar actually tastes like I dunno, but thats the only description I can give.
So, if you are of a spiritual nature, all positive vibes are appreciated. And dont expect too much of me this next few weeks, I’m letting myself take it as easy as possible and for once, I’m gonna do what my doctor says.
Lets see if he is as good as I suspect he may be.
And if maybe, he can restore my faith in modern medicine.

Get ready for a journal of 4 weeks of pills, more pills, no thrills and hopefully very few belly aches!

Friday, June 16, 2006

After many weeks of net-withdrawl, I finally got “The Dixons Group” (Currys, PC World and Dixons stores are all owned by the same company “The Dixons Group by the way), to agree that my previous laptop was actually unusable and give me a replacment. As I was perfectly entitled to with the (many) defects all happening within the one-year manufacturers warranty that comes with all such things pretty much.

Did I get the same model again? Nope, I got a souped-up (to me), Compaq!

A gig of ram, 80 gigs of hard-drive space, big an bright widescreen etc etc…… Im more than happy with it.
Basically it means I got this years technology for last years price, yaaay!
And guess what, I didnt have to buy their “extended warranty” for 300 euros to do it!(Word to the wise, these “extended cover-all warranties” they try so hard to sell you when you buy things from those three stores, are not worth the paper they are written on, your normal consumer rights are actually more beneficial).
Gawds, its been so long since I could post, answer email, read my usual sites etc, Its hard to believe how much you do miss the net until you dont have it no more.

I was using Noahs powerbook (muchos thanks to my guy btw, hes pretty amazing thats for sure), for a couple of weeks till its screen died a death, (I know, I’m jinxed, I warned him!), but now that im back on the windows side, I must admit, I do prefere it. Probably mostly because its what I know, I know my way around windoze. MacOs just felt slightly daunting in its striving to be user-friendly still, windoze just has some (albiet mostly stupid, unneded and bulky) bells and whistles, but oi loikes me bells an whistles ya see. Yes, I’m a geek whos not afraid to admit I prefere windoze to MacOs and Linux! *gasp*

Dont get me wrong, it was definitely an enjoyable experience trying them out, and they have LOTS of good points (definitely could teach Microsoft a thing or ten imho) and they try very hard to be user-orientated, just somtimes feels like they have tried a bit too hard these days. And I’ll never get past their recent admission that they are trying to make machines that are more disposable. (Didnt use those words exactly but that was the obvious implication).

Wednesday, May 31, 2006

When I have a seizure, (I have photosensitive epilepsy), it feels like,… a massive electric shock that shuts my brain and body down for usually 6 or 7 hours while Im usually unconscious.

When I wake, those 6 or 7 hours later, it feels like somone has used my entire body, every single centimeter of it, as a punching bag.
Its an exhaustion thats impossible to explain really. Its like LITERALLY being so tired that moving a finger registers as exhausting.

Then, after an hour or so, that feeling finally begins to wear off.

It screws up my sleep-times for a few days, and I end up awake all night and asleep all day, but finally, when it settles down, I get a sense of relief that “ok, now, it might be another month before I have to go through that again! PHEW!”

I try not to think of how dangerous these grand-mal (tonic-clonic is the new term I believe), seizures actually are. But a part of me knows that Im very lucky that I have woken up after each one. Mostly without injury save for a few black eyes, cuts, nose poundings and cut tongues.
The drugs are working in the sense that Im not having one *every* day, but they do seem frequent enough for it to be very problematic to living a day to day life in any kinda normal way.

They stop me doing things, for myself, for others, for our life, and that, is the truly disabling part. They mean I let people down, I miss out on important things, I dont do the things I should when I was sposed to do them, and a million other things…

If I had to, I would be willing to have them, if I could schedule them.
Every time I have one, it means that that month is going to be a mess of forgetting, frustrating tired anxiety for me. As I try and try to not let it make me stay in bed for the month in absolute fear and terror of having another.

But, I’m lucky enough that I have people around me who care enough not to let me be that selfish. And thats what it would be to me, selfishness.
I live this life, with these people, for however long Im around thats whats important, being with the people I love….. “with“, it means alongside, if I dont live alongside my friends & familly, then Im hardly living with them imho.

So I have to keep fighting the fear of the next seizure I suppose, no matter how exhausting it is to do so.
The worst part of my seizures, isnt having the seizure, or the cuts, bruises, bangs, exhaustion, pain, etc…..

The worst part, is waiting for the next and remembering that yes, it is gonna come, whether I like it or not.

But until then, I want nothing more, than to be “with“,…. there is time enough to be without in the next life.
I want to make the ab-sol-ute most of every second I am here and I am conscious. I have to, because, if I dont, then why bother.

If I’m alone, whether its just sleeping weird hours, not keeping the same hours as every other normal person.
Or indeed, cowering under the duvet worrying about how long it will be before the next seizure.

It makes no difference, that is wasted precious time I could have spent being with the people I love.

My general health alone takes away enough of the time I want to spend with those I love as it is. So every second I can grab being with anyone I love, I must. And being here, going to bed at 7am, is me being selfish.

Saturday, May 27, 2006

I remember, it must be at least 13 years ago, coming home one day, with a little puppy in the inside pocket of my jacket.
We named her Junior, as she was almost a miniature version of the wicklow collie we already had. (Gaza)

Junior was a pretty amazing dog, from the time she was a pup, she had *old* eyes, and always behaved as if she knew she was 100% loved and safe.
We never had to toilet-train her, she did that herself, I cannot remember her ever even making a single mistake in that regard.

She was the kind of dog that when she was with you it felt like you were with a good friend, the kind of friend who just knows what you’re thinking without you having to say a word.

My sister Karen was especially close to her, they were very close friends and Junior always wanted to make sure Karen was ok. She took that job seriously and always had one eye on karen before anyone else.

This morning, Junior died.
It truly feels like a huge part of my life is gone.

But Karen, Karen its hit more than any other one of us can claim.
She hides it well, but she cannot hide a single thing from me, so with me, she knows better than to try (I hope).

The crying will pass and the healing will begin soon.

Junior, will always be in our hearts, a part of all of our lives, and a blessing we had for so many years.

Sunday, May 21, 2006

After my jaws stopped aching from laughter, and I returned to normal breathing, I realised somthing.

When I was a kid, I remember seeing whoopi doing her sketch about a person with a disability realising that a lot of the world, despite what she had made herself believe, really didnt give a as big a damn about her disability as she told herself they did.

It reminded me again (an I needed to be reminded, I tend to forget the big stuff and stress about the small stuff)….. reminded me again, that my own insecurities about my looks / intelligence / capabilities, etc,….. the stuff that brings me down somtimes,…… mean more to me than to any of those people who I worry would see me differently.

Damnit, thats a LOT of me’s” in that sentence,…. wow,…. I need to remember to stop oppressing myself again!!!

Saturday, May 20, 2006

Elaine (mother of my first nephew Liam ), and Karen (she to whom Prada, D&G, etc. are considered what “you wear when going to the zoo or grocery shopping”)

Both of them are younger than me, and there have, throughout our lives- been times when I would have quite happilly given either or both of them to a passing circus.

BUT….

I would be lying if I said I didnt love them, both of ‘em.
They both, have many times, been what “keeps me going”, more times than either of them know or ever realised I suspect.

Growing up, I set a lot of “bad examples” for them, but When I went out into the big wide world myself, and moved out of the familly home, and into my own house, alone,…..knowing I was their “big brother” helped me by reminding me that if I did it, they would know they could too. I saw it as setting the best example I could
I made sure I did it.
As always I made a lot of mistakes, but thats ok, thats all part of the process. Ultimately, I’m happy, I’m (getting slowly) healthy, I’ve gotten to a place where I finally feel 1000% comfortable and somwhere along the way, I realised they had grown up too.

Now, after all the normal childhood rows and pranks, I have two sisters whom I can truly say, are also my friends

Sunday, May 14, 2006

I dunno why I cant sleep tonight….. I’ve been awake since 11am, ive had a long day,…….if I went in an lay down I know I would sleep…………why cant I bring myself to go do it?

I think maybe its because this last week, i’ve so not been sleeping well, its been a mixture of de-hydration, nightmares, and australian cop-shows………… not really a healthy mix I spose.
Well, I’m rambling, I think Ill just go surf till I canna surf no more!

Friday, May 12, 2006

Its kinda strange to me still, even now,…

How, via this thing we call the internet. this big jumble of ether and electronics,… how we manage to come across certain people, who we just somhow *know* are wonderful people.
I’m not talking about somone you just come across and think “that person sounds nice”………I’m talking about somone you just seem to find in your life and you just “know” that this person IS, not just nice, but genuine with it.